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How to Be an Advocate

Remember you will be with your LO the majority of the time.  Your LO may showtime (where your loved one acts totally normal or even upbeat) during a doctor’s visit so be sure to let your doctor know. 

  • Have more than one person at doctor visits.
  • Make sure the care team has information to glean from regarding LBD.
  • Keep a log of meds that DON’T work and those that do.
  • Take the list of meds to every Dr and hospital visit.
  • Keep a daily log of bp/bms/urinary output/activity level. Download our example log - coming soon!
  • Make sure ER staff understands the dementia that your LO has, most of the time they will not. There is a medical card that you can print off the LBDA.org website and print off extras in case of an emergency.
  • Get in touch with Compassus/Hospice which helps with more than just at the end of this journey. 

Here's What Worked for Our Family

  • Remove any items that are causing your loved one any anxiety.  It may be your favorite item in the home but removing it will help ease his/hers anxiety in that moment. (He may want it back in 5 minutes or 5 days or never but it will ease the tension.)
  • Lighting.  Some patients have visual issues and may see people, animals, etc. in shadows. Some can be frightening especially with hallucinations. See where shadows are cast and add or take away lighting in that area.
  • Old shows that are funny.  Our dads favorites were Golden Girls and Friends.
  • Music.  Any kind of music that they used to love.
  • Speaking quietly, even if they are yelling, speak quietly.
  • Remember their senses are heightened so whatever you are feeling - they are feeling.  If you are angry they will mirror that. If you are patient they will mirror that.
  • Walk slowly into the room that they are in.
  • Do NOT make sudden movements towards their face or their body.
  • One instruction at a time or one question at a time and wait for their answer.
  • If you are with your LO in a group, allow one person to speak at a time.

And no matter what…

  • L: Love them.  They can feel, not always, the love you have for them.  They may think you are someone else (Capgras) but love them anyway. 
  • O: Omit negative emotions before you walk into a room with your loved one.
  • V:  Venture out and find respite. Care.com is one place to find good help.  Make sure whomever you hire for respite has lewy body dementia care experience.
  • E: Empathy for your loved one and yourself. Reach out and ask for help as the caregiver.  Try to remember your loved one didn’t ask for this disease either. Love them, love them, love them.

Here's what Didn't Work for Our Family

  • Disagreements with ANYONE (including doctors) in front of your loved one with LBD.
  • Speaking harshly/loudly to them.

Remember whatever your feeling they will feel: anxiety, sadness, anger, etc., they will mimic your emotion.  Use the LOVE acronym.

Check yourself.  Do not let your lack of self care be the root of any added heated emotion that your loved one may be affected by. The acronym HALT is easy to remember. So if you are hungry, angry, lonely or tired - stop and get what you need to replenish so you can be of help.

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